[rose of his heart]

Disclaimer: For those of us who are brave (or perhaps self-sabotaging) enough to admit to ourselves (if not to our competitors for the Most Positive PD Patient of the Century Award) that there is a remote if highly unlikely, hardly-worth-mentioning shadow of a possibility of a far, distant, unimaginable, against-all-odds, cure-imminent-yet-cure-absent future in which we may (but probably will not) discover that cycling; running; Wii®'ing; visualizing, and Azilect®-, ayahuasca-, fava-, macuna- or CoQ10-downing can not keep the later-stage PD wolf from our door. Therefore, I thought we might begin to share what you know and I am now learning about housing options for PWP. For the rest of you, this would be a good time to put your computer to sleep and do something “possibly” neuroprotective, or at least more uplifting. Then again, Ben & Jerry may be free...

As if that weren’t preface enough, here’s the context: On Monday, I took my mom, who has Diffuse Lewy Body Disease (LBD) and lives in a four-bedroom colonial accompanied only by apparitions of recently and long-dead relatives, to tour an assisted living facility. Holding her hand so neither or both of us would fall, I felt this strange twinning of past and future-made-present, like mother and child arriving at kindergarten for the first time. We turned to one another and whispered simultaneously, It will be okay. With an impressive flair for marketing (portals, anyone?), the home’s initiating experience for the visitor consisted of a black lab lying just inside the door, with tail wagging and head cocked. Before I had a chance to interpret the presence of a black dog as a bad omen, she turned over, inviting us to pet her. I watched my understandably nervous, resistant and slightly suspicion mother grow visibly more vibrant and relaxed. Good ice-breaker/therapy, good marketing. Were I still working, I would have taken copious notes for future reference.

Diffuse Lewy Body Disease is lodged in my dark-humored mind as "the love-child of Parkinson's and Alzheimer's." Because LBD’s meddlesome protein clumps are not confined to the midbrain (as is more or less so in PD) but appear throughout the brain, LBD's claim to fame is its ability to wreak all the damage of PD plus dementia similar to that found in Alzheimer's. Once mom began to grasp the symptoms of LBD, she blurted out, So that’s why your great-grandma shook so terribly and spoke to people who were not there! Lessons learned: (1) Never ask if there is PD in the family; ask whether any of your ancestors had a tremor, was unusually fatigued, had trouble walking, had troubling remembering things, talked to ghosts, etc.; (2) I wasn’t being paranoid in December 2008 when it occurred to me that my self-diagnosed (and subsequently corroborated) PD might actually be LBD (time will tell), and (3) the genetic plot thickens despite all my unremarkable genetic testing results and measured/documented cognitive changes. GGM=LBD or PD with Dementia?, GM=PD, M=LBD, Me=PD? (BTW, if you have a relative who has been diagnosed with Alzheimer’s and there is PD in your family, you might want to get a second opinion about the Alzheimer’s diagnosis. The treatment protocol for LBD is substantially different, and misdiagnoses and inappropriate prescriptions are plentiful.)

So back to the visit and what I learned. This may not apply everywhere but may inspire you to look into your local choices sooner rather than later. The place we visited is a nonprofit with more than 50 years experience; some might call it upscale I imagine, though it does have a HUD-subsidized building as well, which makes it within reach of almost everyone in terms of financial eligibility. They have never asked anyone to leave due to financial hardship; they have always “made it work.” So what do you get in the main (full-pay) building for approximately $4,000/month? Your suite would include: studio or 1-BR apartment with a living and dining area; appointed kichenette; bathroom with a walk-in shower and bench seat; utilities except telephone and cable TV ($27/mo. each) and internet; heat and A/C controls; 24-hour security and a call-for-aid system. Inclusive services: meals served in fireside dining room, wide-variety menu with alternatives three times per day; all-day café; concierge; weekly housekeeping and laundry; transportation for shopping, appointments and community activities; onsite physicians and a naturopathic medicine clinic. Amenities: spacious grounds with walking paths (40 acres); four sunny lounges opening to covered porches; country kitchen for baking, crafts and family get-togethers; volunteer-run store for gifts and sundries; library. Plus all sorts of activities, classes, clubs, outings, volunteer opportunities and membership in a wellness center with a full-time trainer and current pool as well as space for PT, OT, ST and massage.

So say you have a solid nest-egg and move in. Then the good news: your new, likely healthier lifestyle strengthens you against the ravages of PD and time. The bad news: you start to run out of money. So you move across the way to the HUD-subsidized building, which cuts your rent in half. You flourish nonetheless; your money is shrinking. You apply for the subsidy; you get it and, combined with your other retirement income, you’re golden. No other income? As a nonprofit they’ll work it out. You will not likely find this at a for-profit facility. Meanwhile, what if you start to need FT nursing care or supervision? You can pay out of pocket for help in place or you can go to the organization’s nursing home, which has a dementia wing. No money? Title XIX. And again and again, I am told the nursing staff doesn’t even know who is or is not on Title XIX. The care is the same; only the amenities differ.

Beyond finances, the trick is twofold: medical eligibility and timing. Apply too soon and you may have trouble getting in due to age minimums (although I was told that may be waived in the case of YOPD), or you might spend more money than you need to in the early years making you worry about the later years and about leaving money for family. Apply too late—meaning after you need help regularly—and you’ll get rejected or the waiting list may be long. At least for the nicer places. Even assisted living residents are told to be on no less than three waiting lists for good nursing homes (which run $10,000+/month) so that a bed will be available in a good place when you need it. At the facility we visited, residents get “first dibs” on nursing beds but still it is no guarantee. Because those of us who make it to Stage V of YOPD are likely to linger longer than the average nursing home resident, and may have trouble communicating, quality matters.

But let’s back up. To pass the medical eligibility test for the assisted living facility I visited, one must be independently mobile. Wheelchairs do not disqualify you as long as you can get in and out of it by yourself. And you must be intellectually independent, meaning you pretty much handle your day-to-day activities on your own. You remember who you are, where you are, your children’s names, how to take care of yourself and your apartment, and other activities of daily living. Once you are in, should you begin to require help with any of those sorts of tasks, you can hire help. But if you wait till you need that help to apply, you are up the creek. You are then left to fend for yourself or go directly into nursing care. Do not pass go. Do not collect new friends, watercolors, or enhanced safety measures with onsite help. And if you’re a guy, do not collect the widowed octogenarians who inexplicably miss doting on men! Nurses aids and others are available on an as-needed or contracted basis; they can help you shower or dress, give you your medications, etc. So the moral of the story, which is a bit choppy but well-intended, is that the more proactive we are in discovering and planning for the last years of our lives the more choices we will have. I am beginning to think about assisted living not as giving up our independence but as extending it. Sometimes, the only way to relieve one’s anxiety about the future is to research, plan and take the steps necessary to cover all the bases.

Now I have to get ready for an big event. Somehow your Rose has managed not only to survive her first year with diagnosed PD but also to volunteer effectively enough to win a big award. I should probably credit my agonist despite our recent falling out….LOL. So at 4 pm EST please send me virtual hugs as I struggle with what to say while remembering my LSVT techniques!

I know I have a lot to learn...as do many of us. Let's a add our two cents. Thanks! In solidarity,
Rose

[indigogo]

Hi Rose,

I am going through this right now with my mom who has Alzheimer's. She is moving into a small, private, residential home TODAY. I am in Seattle; she, my dad, sister, and large extended family are in Denver. My sister and I have been a great tag team; me doing research on the phone and internet, she following up on the ground. Together we found what we hope will be a good place for our mom. It is a home in a suburb near where my folks live, so it will be easy for Dad to visit. There are 6 residents, all women with Alz, and 3 staff always on duty. The house has a nice backyard with a vegetable garden, and a park nearby - they insist on daily exercise. Experienced in dementia care, they will take care of Mom until death. It costs close to $4000/month; we can manage that for about 2 years, but are moving ahead to qualify for Medicaid. We are moving her now because it has become too difficult to care for her at home (my dad is both guilt-ridden and filled with relief), my sister has been bathing her; he has been unable to keep her in Depends. I am on my way out to spend some extended time with my dad as soon as I can get myself ready and on the road.

In the meantime, I have been doing some writing for a local non profit who are raising funds for Parkinson's-specific long term care. Consequently, housing needs for PD/and/or/dementia care are on my mind a lot these days.

The non profit has decided to build a high-end, beautifully designed facility that is institutional with a "family" feel; it should be wonderful. But, as I pointed out to the board members, I would never qualify to live there because of cost ($5-$6,000/month), and they do not plan at first to take Medicaid clients.

Money is a problem. I don't know what I'm going to do as I decline. It's been 11 years; I feel very comfortable living on my own, but I don't know how long that will last. I have no answers, except that I will take things as they come and something will emerge.

But that is not generally a good long term planning strategy. Housing for PD people becomes more challenging as our population becomes younger.

[olsen]

Rose, I send you lots of virtual hugs and a hearty
"congratulations". Enjoy your night and the spotlight. madelyn

[chasmo]

I was thinking that some of the bigger Parkinson's organizations should have a database of those with extra space and those needing "roomie". With the care-givers allowance, it could be a good deal for everyone concerned.

[rose of his heart]

With a big shout out to Vicky, who posted this link a couple of years ago:

https://www.parkinsonsspecialtycare.org/ Parkinson's Specialty Care is a nonprofit organization in the Minneapolis/St. Paul regional area that offers longterm and respite residential assisted living. Their mission: "To provide a warm home environment that promotes respect, dignity and the highest quality of care. We truly believe that every individual has a voice and that all clients, regardless of functioning level or cognitive ability deserves compassionate loving care. Our goal at Parkinson's Specialty Care Residence is to provide this kind of care every hour of every day."

[Conductor71]

Originally Posted by rose of his heart

With a big shout out to Vicky, who posted this link a couple of years ago:

https://www.parkinsonsspecialtycare.org/ Parkinson's Specialty Care is a nonprofit organization in the Minneapolis/St. Paul regional area that offers longterm and respite residential assisted living. Their mission: "To provide a warm home environment that promotes respect, dignity and the highest quality of care. We truly believe that every individual has a voice and that all clients, regardless of functioning level or cognitive ability deserves compassionate loving care. Our goal at Parkinson's Specialty Care Residence is to provide this kind of care every hour of every day."

Wow, Rose, leave it to you to explore the November of my soul kind of questions that I had tidily tucked away deep in the recesses of my mind along with that melanin which is slowly retreating from my substantia nigra. My first inclination is to think Fantasy Island but then I gaze down at my beautiful sleeping 15 month old son and realize "wow, I suck" - I never wanted him to have to make any decisions like this. Short of adopting a Native American approach of wandering off into the woods when I have become too much of a burden, or getting swept up in the romanticism of not going gentle into that good night, I have thought very little of this. Clearly, I have thought very little for it is highly unlikely that I will actually be able to wander anywhere or rage against anything when trapped inside my body. I wonder if Poe was really writing on the end stage of PD hen he penned The Premature Burial....

I digress, but have no where else to go with this one. Funny, though, isn't that what our PD organizations do for us too? Offer digressions, illusions, as if this whole thing can't be overcome with a little pluck on our part and a lot of caregivig on the part of others. Never in their success storied do they feature end stage PWP- everone seems to get on just fine with a forced medical retirement on SSDI, I mean really who doesn't have at least $4000 a month to have round the clock care?

Quite honestly, I rather hope that my kidneys or liver fink out having had their fill of the gold standard before this, or that dystonia will force me into a permanently twisted seeking enlightenment kind of position under a tree. I really can't begin to deal with the reality on this one.

Laura